2017 Centre for Disability Studies - Providing expertise in disability knowledge and practice
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Centre for Disability Studies ANNUAL REPORT 2017 Providing expertise in disability knowledge and practice
Welcome Building Capacity For Change Our mission is to create and disseminate knowledge that improves the lives of people with disability. We focus on designing and developing research, teaching and workforce development initiatives, and clinical practice that informs disability policy and practice. Our work is guided by the lived experience of people with disability, and we strive to meaningfully engage people with disability in the creation, development and execution of our programs. We work with a range of stakeholders including people with disability, non government organisations across the sector, government, and families. Through our close links with research communities worldwide we have both an Australian and international focus. We consist of a multi-disciplinary team from diverse backgrounds including medicine, health sciences, education, psychology, speech pathology, occupational therapy, physiotherapy, sociology and law. Our approach is person-centred and based upon the social model of disability. Professor Patricia O’Brien Director | Centre for Disability Studies
Contents
01
Chairperson’s Report
08
Pillar 2: Disability Access & Clinical Education
Page 1 Pages 35 - 36
02
Message from the Director
09
Pillar 3: Education & Training
Pages 2 - 8 Page 37 - 40
03
CDS Board Directors
10
Pillar 4: Research, Evaluation & Development
Pages 9 - 12 Page 41 - 45
04
CDS Leaders
11
Events, Visits & PhD Students
Pages 13 - 16 Pages 46 - 50
05
CDS Staff
12
Publications & Conference Presentations
Pages 17 - 26 Pages 51 - 52
06
CDS Associates
13
Teaching
Pages 27 - 32 Pages 53 - 56
07
Pillar 1: Clinical and Consultancy Services
14
Annual Financial Reports
Pages 33 - 34 Pages 57 - 60
Chair person’s Report
o-Anne Hewitt
J
Chairperson
The end of 2017 marks another successful year with a Fellowship Award from the Australasian
for CDS. This report is written with mixed feelings Society for Intellectual Disability (ASID). Vivienne
as I step down as Chairperson after just over has made an immense contribution to international
7 years in the role. I am incredibly proud of the research across her substantial career and has
work of CDS and although sad to be stepping been a key contributor to the work of ASID for many
away from the Chair, I am pleased to remain on years, making her a fitting recipient of this honour.
the CDS Board and thus continue to contribute to In addition, our own Professor Patricia O’Brien
the future of this wonderful organisation. was bestowed the Senior Scholar Award at the
recent Inclusive Education Summit in Adelaide.
This year has been one of great celebration, as CDS Congratulations to both Vivienne and Patricia on your
marked its 20 year anniversary. The achievement achievements!
of this milestone gave cause to honour the work of
current and past contributors who have been key CDS owes its continued success to our committed
to the success of CDS including Professor Emeritus and hard-working staff and the exemplary leaders of
Trevor Parmenter, whose vision and tenacity saw the our four strategic pillars under the tireless leadership
establishment of CDS as a world leader in Disability of Professor Patricia O’Brien. On behalf of the Board
research and practice, and Professor Patricia of Directors I would like to extend my thanks to
O’Brien whose innovation and leadership has the staff and leaders of CDS for your passion and
taken CDS from strength to strength over the past excellence in the pursuits of CDS’s mission.
8 years, setting CDS on a sustainable path for the
future in the current changing policy landscape. We My sincere thanks goes to the CDS Board of
celebrated the work of past and present staff and Directors who have given freely of their time and
supporters and the significant body of work CDS expertise throughout the year to support and grow
has, and continues to produce, including a specific the work of CDS. In particular I would like to thank
focus on uni 2 beyond. and acknowledge Professor Karen Fisher who
is stepping down from the Board after 7 years of
A flagship initiative of CDS, uni 2 beyond, service. Karen has provided expertise in the area of
was honoured at this years’ National Disability research and evaluation, as well as wise counsel to
Services conference with an International People Patricia and to her fellow board members over the
with Disability Day award. CDS won the award course of her tenure. I’m confident that Karen will
in Leadership in accessibility and inclusion in remain a friend and supporter of CDS.
November in Canberra. Our recent “Crowd Funding”
campaign has generated financial support from Final thanks go to Dr Amanda Mead, who stepped
a wide cohort and will contribute to the ongoing in as Interim Chairperson upon my recent
success of the program resignation. Amanda brings extensive experience in
Board Governance and Chairpersonship and I am
As in other years, our CDS staff have been the confident she will take CDS from strength to strength
recipients of prestigious awards throughout this year. in the future.
Clinical Professor Vivienne Riches was honoured
1 CDS | Annual Report | 2017
Message from the Director
rofessor Patricia O’Brien
P
Director
Maori have a saying “by acknowledging the past The multi-disciplinary team at Cremorne has
and laying down the foundations for the future, delivered the following number of consultations:
past, present and future are brought together in
one space’ (Marsden, 1990). Such a quote seems 1 adult comprehensive health assessments,
8
to be very relevant in the 20th anniversary year including 1 transition client
of CDS. As a result my report for the year past is 39 adult review assessments
one that focuses on activities that can be traced
to the past, and activated over both the last 27 adult psychiatry consultations
financial and calendar year, with potential
for future growth. 68 paediatric consultations with paediatrician
and/or psychologist, including 23 school clinic
STRATEGIC PLAN 2017- 2020 consultations.
In 2016 CDS introduced a new strategic structure to I would like to acknowledge the work of the
capture its vision of ‘Building Capacity for Change’. Cremorne team comprising:
Objectives for the following four pillars were
introduced under the titles of: Pillar 1: Clinical and linic Director, Developmental Disability Physician
C
Consultancy Services –Existing Clinical Services; - Dr Seeta Durvasula
Pillar 2: Disability Access, Clinical Education,
NDIS Initiatives; Pillar 3: Education and Training; taff Specialist Developmental Paediatrician
S
Pillar 4: Research, Evaluation and Development. I - Dr Yvette Vella
will now highlight how throughout the time period
Staff Specialist Rehabilitation Physician
under discussion the foundations of CDS have - Dr Elizabeth Thompson
been strengthened with a view to its future. My
commentary will also capture ongoing challenges. Paediatric Psychologist - Mr Ashwin Singh
PILLAR 1: CLINICAL AND CONSULTANCY taff Specialist Psychiatrist - Dr Keith Johnson
S
SERVICES - EXISTING CLINICAL SERVICES. followed by Dr Luisa Butler
Throughout the last year both the Northern Sydney Clinic Coordinator Ms Elizabeth Hammond
Intellectual Disability Health Team (NSIDHT) at
Cremorne; and the NSW Developmental Disability roject Officer - Evaluation and Database
P
Health Unit (DDHU) Ryde, have continued to provide - Dr Sam Arnold
much demanded health assessment and allied Social Worker - Kate Flannery
health services under the leadership of Dr Seeta
Durvasula. Clinic Nurse - Rebecca Stack.
2
Message from the Director
Similarly at DDHU, I would like to acknowledge but it has also laid the foundation for CDS to now
the team involving introduce a PCAS Instructor Model Program where
the training will focus on certifying Instructors through
linic Director, Developmental Disability Physician
C the delivery of a PCAS train-the-trainer program.
- Dr Seeta Durvasula
I-CAN v5
Psychologist - Dr Vivienne Riches
This pillar has also seen regional training in the
Clinic Coordinator - Ms Nicky Shellard I-CAN needs assessment tool delivered by Laura
on- salaried staff - Dr Jane Law, Dr Diana Merhi,
N Hogan, Sam Arnold, and David Ackling- Jones in
Professor Ian Cameron, Dr Avanti Karve Dubbo and Grafton. Building upon this success a
hub and spoke model has been developed where
Social Worker: Christine Papangelis. CDS will have certified licensed trainers in hubs
(external to Sydney) running commercial workshops
The team at DDHU has delivered once again linking the development work of previous
years to a future where I-CAN training is more
369 consultations including 65 new clients accessible throughout Australia. A USB stick with
291 medical consultations I CAN program on it is also soon to be launched.
Staff member, Jemima MacDonald, has also recently
12 Ageing and Dementia Clinic consultations joined the team of I-CAN trainers from CDS.
48 psychologist sessions NDIS Readiness
18 dentist sessions. As an overall organisation CDS is registered with
the NDIS but in order for individual staff to provide
Further the staff of both clinics are recognised services under the scheme much work coordinated
through the reports they deliver, not only to their by Sarah Wagstaff is being done to gain Third Party
patients but also to both referring medical and allied Verification (TPV) for the organisation.
health professionals. In doing so they transfer much
needed knowledge to the generic medical and allied Social Networking Group
health fields. The value of their specialisation has
been validated by family members who over the 20 Another aspect of this pillar that has continued to
year history have found answers for their sons and play its part in fostering community inclusion as
daughters undiagnosed health issues, enabling well as natural relationships is that of the work of
them to cease the ongoing search, going from one the Social Networking group (SNG) led by Jemima
Professional to another. MacDonald and supported by Jessica Buhne and
Sarah Wagstaff. On a monthly basis this inclusive
PILLAR 2: DISABILITY ACCESS, CLINICAL group meets to build networks, friendships, as
EDUCATION AND NDIS INITIATIVES well explore new social activities experiencing
pub culture, concerts, walking, picnics and beach
Person Centred Active Support (PCAS) activities. Travelling to and from venues, meeting
Throughout 2016/ 2017 the work of this new pillar new people on a regular basis, trying out new social
under the leadership of Laura Hogan has seen the activities has enabled the members of the group
completion of a major contract to train over 200 to grow in social confidence and build inclusive
direct support staff and managers in Person Centred networks between people with and without disability.
Active Support (PCAS) funded by ADHC. Not only
does this leave a legacy from ADHC within the field
3 CDS | Annual Report | 2017
Message from the Director
PILLAR 3: EDUCATION AND TRAINING MacDonald joining the team in Alice Springs in
December. In Singapore a 7-day workshop was
Here I would like to acknowledge the work of the facilitated by Professor Patricia O’Brien, Ray Murray,
co-leaders Emma Doukakis and Friederike Gadow Emma Doukakis and Deborah Espiner for Rainbow
with Kate Flannery taking up maternity cover for Centre School and members of its consultancy team.
Friederike since May 2017.
uni 2 beyond
An area where the past has come full circle is
the return of CDS staff teaching on the Masters The education and training strand also incorporates
in Developmental Disability through School of the uni 2 beyond initiative coordinated by Jemima
Health Sciences, University of Sydney. In 2016 Dr MacDonald, supported by Jessica Buhne and
Seeta Durvasula taught a unit in ‘Physical health, Kate Flannery. The 2015 uni 2 beyond cohort of
developmental disability’ and this year an online unit students completed their two year experience at
of study titled ‘Positive Behaviour Support Promoting the end of 2016 with a ceremony of awards in the
Quality of Life’ was delivered by Clinical Professor grandeur of the MacLaurin Hall. The 11 members
Vivienne Riches and Laura Hogan. of the 2017 intake are carrying on the tradition of
presenting their work on a six monthly basis through
Training workshops and Bespoke courses oral presentations to their peers, family members
Apart from formal qualifications 2016-2017 has seen and university staff. 2017 has also seen the uni 2
the refinement and further development of CDS beyond students collaborating with their peers in
Professional Development workshops in a range the School of Education and Social Work across a
of areas, such as medication management, cross- series of service learning projects built around the
cultural awareness training, anxiety and depression strengths of the students with intellectual disability.
management, relationships and sexuality, and Such collaboration is indicative of how students with
research fundamentals for human services. intellectual disability can contribute to university
Collectively these workshops have attracted a range scholarship versus being seen only as recipients of
of participants from Sydney, regional NSW and traditional services.
interstate (Queensland and Victoria), and breadth This last year has seen the uni 2 beyond initiative
of participant roles ranging from direct support reap the benefits of its founding vision to gain public
professionals to executive staff. A highlight was the recognition inclusive of: NDS Industry Innovation
return of a breakfast meeting where Al Etmanski Award; Professor Patricia O’Brien receiving the
and Vickie Cammack from Vancouver, Canada, Senior Scholar’s award from The 2017 Inclusive
encouraged discussion and reflection on Achieving Education Summit (TIES); and at the time of this
Impact and Caring, Leading and Impacting in meeting uni 2 beyond is a finalist in the National
Turbulent Times which was attended by senior Disability Awards celebrating International Day for
executives from across Sydney. People with Disabilities, which will be announced in
In terms of bespoke training programs building the first week in December.
upon the leadership that CDS has given in person- In terms of the theme of this report that the past,
centred practice, CDS won two major contracts present and future are interconnected, much energy
to deliver person-centred training respectively for has been placed in locating funding including
the Rainbow Centre, Singapore and the Northern a crowd funding campaign for the uni 2 beyond
Territory Government. Within the Northern Territory, initiative to continue post 2018 arising from loss of
workshops have been delivered by Emma Doukakis core funding with the closure of Ageing, Disability,
and Laura Hogan across multiple sites inclusive Home Care (ADHC). Corporate sponsorship
of Darwin, Katherine, Nhulunbuy, with Jemima
4
Message from the Director
packages have been developed and are being A literature review was completed that indicates
distributed; fund raising events, such as, a luncheon significant unemployment and underemployment
attended by insolvency lawyers, facilitated by Hall among people with ASD worldwide. Australian
& Wilcox, a Melbourne- Sydney based law firm, data also indicate huge variations in placement
have seen senior staff and students attend and and retention outcomes achieved among Disability
speak about the value of the initiative. Within this Employment Service (DES) providers.
context CDS was pleased to win for the first-time
competitive funding from Sydney City Council to The study is investigating key barriers and facilitators
fund employment internships for uni 2 beyond for improving valued economic and non-economic
students. Our corporate sponsors including Crown employment outcomes for and with people with
Development, MI Engineering, Commonwealth Bank, ASD, and aims to identify evidence based practices
Hall and Wilcox continue to support uni 2 beyond. and support strategies to assist people gain and
New funding strategies continue to be developed retain valued employment. Strategies include an
and promoted by Kate Flannery and Jemima online survey of DES providers, interviews with key
MacDonald. stakeholders, and identification of key evidence
based practices. Data will be used to design a
NDCO prototype program that could be trialed with a group
of jobseekers with ASD.
This year the position has been co-shared by Vera
Laptev and Jessica Buhne. A highlight was the Inclusive Research Network (IRN)
series of lectures well attended on ‘Return to Work’
with three sessions that covered topics including: The work of the Inclusive Research Network has now
Starting your own Business, Advocacy in Education been sustained since 2010 with its co-ordination
and Return to Work. moving from Dr Marie Knox and Professor Patricia
O’Brien to Dr Tanya Riches. This year its work
PILLAR 4: RESEARCH, EVALUATION AND culminated in four presentations at the 2017 ASID
DEVELOPMENT PILLAR Conference, Hobart, as outlined below:
Key to the theme of the relationship between past 1. Two of Us Project
and present research and the future is sustainability
of ongoing relationships illustrated below: This project was inspired by the Good Weekend
column called the Two of Us and examines what
Improving Employment Outcomes among People makes for good individual relationships between
with Autism Spectrum Disorder (ASD) people with intellectual disability and those that
they choose to relate to, such as family members,
This project was led by Clinical Professor Vivienne mentors, long-standing friends. The project was
Riches and supported by Dr Tanya Riches & a team effort between Jack Kelly, Sarah Wagstaff
Vera Laptev in 2016. CDS was funded by NOVA and Emma Doukakis. The stories were on display
Employment to investigate the employment at the CDS 20th Anniversary celebration and were
outcomes for people with disability and key evidence thematically analysed for a presentation at the 2017
based practices and processes that enhance ASID Conference.
employment outcomes. Following on from this highly
successful research project, in 2017 CDS was 2. Reporting Back Project
again contracted by NOVA to study the employment
outcomes among people on the Autism Spectrum This year Dr Marie Knox, who I would like to
and the barriers and facilitators impacting these acknowledge as my colleague who shared the
outcomes. initial CDS vision of ‘No Researching Without Us’
5 CDS | Annual Report | 2017
Message from the Director
back in 2010 , worked with a team of inclusive Ministry of Education - Singapore
researchers. Together they collected data on the
inclusive researcher experience of reporting findings In 2017, Clinical Professor Vivienne Riches was
to management on how person-centredness was again contracted by the Special Education
implemented within their respective services. Department (SPED), Ministry of Education,
Singapore to provide further consultancy and
This project has documented the experience of professional development in Transition from school
bridging the power divide between service-users to post-school planning and implementation and
and management. The findings were also presented the school-to work (S2W) initiative. A number of
at the 2017 ASID Conference. professional development workshops were provided
in May 2017 for staff from SPED schools across
3. Publishing Project the four phases of the project. These focused on
This group project co-led by Dr Tanya Riches and understanding the purpose and elements of the
Professor Patricia O’Brien involved well known Transition Planning process and best practices
international and national university inclusive for students with special needs; how to customize
researchers being interviewed by members of the the curriculum to meet transition goals; and
CDS Inclusive Research Group. The aim was to understanding the importance of and working
identify their views on what they saw as inclusive in collaborative partnerships with parents and
research and if and how they had gone about caregivers and SG Enable.
publishing with people with intellectual disability. Review of FACS assessment procedures for
The outcomes of this project were also presented at identifying residents that need specialist nursing
2017 ASID Conference. In 2016 the IRN published support in group homes
its first article in the British Journal of Learning
Disability, reaping its work of the past in developing This project was led by Clinical Professor Vivienne
a publication record for the future. Riches with team members Dr Seeta Durvasula,
Dr Tanya Riches, Professor Patricia O’Brien with
Down Syndrome Singapore Adult Enhancement support from Dr Lani Campbell. The report is being
and Infant Toddler Projects finalised with implications for assessing the type and
Both of these projects continue with ongoing level of nursing and medical care in the devolution of
consultancy. Several visits have been made to people with high and complex health, behaviour and
Singapore in 2016-2017 by Professor Emeritus ageing needs from large residential services into the
Trevor Parmenter, Clinical Professor Vivienne community.
Riches and Professor Patricia O’Brien to support ARC Independent Supported Living Project (ISL)
staff of the Adult Enhancement Program to both
individualise and personalise the program and to Professor Patricia O’Brien, Friederike Gadow and
promote community inclusion for its adult members. Dr Tanya Riches were involved in bringing the ISL
The Infant Toddler program has flourished since its Grant to fruition with a final report submitted, a film
introduction at DSA in 2016 under the guidance and illustrating the value of individual living for a young
mentoring of Maureen Corby. Maureen is contracted man with intellectual disability, and an updated
as a CDS early intervention consultant advising on evaluation tool. CDS is now involved in a further
the development of a play-based, family-centred application to the ARC with a view to exploring the
approach to early intervention for infants between learning of independent living for the devolution of
the age of 0-6 years and their families. the group home model.
6
Message from the Director
CRC Bid making a difference for its stakeholders. I wish to
thank them both as they step down, Karen from
Professor Patricia O’Brien has also joined a team to being a Board Member, and Jo-Anne from CDS
develop an application for a Cooperative Research Board Chair.
Centre Grant (CRC) entitled Integrated Health and
Human Services for Australia and Asia Pacific. The Personally I would like to thank Jo-Anne Hewitt, who
University of Sydney has contributed $10,000 seed as Chair has always been available to me to discuss
funding for CDS and the Menzies Centre to join the and problem solve ongoing issues associated with
team led by Dr. Robbie Lloyd of Port Macquarie keeping CDS on the path of its mission, solvent and
Community College. a place that staff liked to be. In going forward we
are very fortunate that Amanda Mead has picked
PhD Students up the mantle as Chair capturing the present and
Several students, Peter Smith, Emma Gentle, Jing embracing the future with the full support of both
Li, Friederike Gadow, Adel Suda, Sharon Kerr Board and CDS staff members.
and Rachel Wotton continue with supervision from A further farewell for CDS occurred in February 2017
Professor Patricia O’Brien, Professor Emeritus Trevor with the resignation of Dr Sam Arnold after 10 years
Parmenter, Clinical Professor Vivienne Riches and of service to CDS. Sam’s contribution spanned all
Dr John Gilroy. In 2018 Dr Tanya Riches will also be areas of the work of CDS, with involvement in both
joining the PhD supervision team. Congratulations training and research, particularly associated with
must go to Ali Al-Alosi who graduated with his the I –CAN and Active Support. I know that staff join
doctorate in December entitled: ‘The Right of me in thanking Sam for his valued contribution and
Political Participation for People with Disability’. we wish him well in all his future endeavours.
Recognition In closing I would like to acknowledge the work of
Over the 20 year history of CDS it has played its the CDS staff. Their commitment and professional
part in leadership roles within ASID, IASSIDD and competency ensures that the contribution of CDS
within this context it was very pleasing that Clinical over the last 20 years now goes into a third decade.
Professor Vivienne Riches was recognised at the I would also like to mark my appreciation of the work
recent ASID Conference with a Fellowship Award of the administrative staff of CDS, Peta Hurst and
recognising not only her service to NSW ASID, also Bruce O’Brien for their support to myself and staff
her contribution to disability research. and for their good nature, creative problem-solving
and unfailing commitment to meeting deadlines.
Over the last year the CDS Board has invested Thanks also to Glenn Murray and his team from
its energy and resources in ensuring that the Accounting for Good, Rose Zhao, and Jane Chen for
organisation is commercially viable. The introduction smooth financial management and to Vaia and John
of the strategic pillars with senior leaders appointed Webster, Your HR Manager, for their sound advice
has had the full support and strategic guidance of across all HR matters.
the Board. As an organisation over the last seven
years CDS has been fortunate to have leadership In conclusion as we move into 2018 we can learn
within the Board from both Jo-Anne Hewitt as Chair from what is reported here in the 2017 Annual Report
and Professor Karen Fisher as a Director. Both have in preparing for another year actively engaging as
given freely of their time and wise counsel arising our mission indicates in:
from depth of knowledge within the disability field ‘Providing expertise in Disability Knowledge
and deep commitment to the role that CDS plays in
and Practice’.
7 CDS | Annual Report | 2017" We Are Only Human Through
the Humanity of Others and if
we are to accomplish anything
in this world it will be in equal
measure due to the work and
achievements of Others."
Nelson Mandela, 2010
In Preface of Stengel, R., Mandela’s Way: Lessons for an Uncertain Age
Broadway Books, United States of America.
8CDS Board Directors
Jo-Anne Hewitt Dr Amanda Mead
Chairperson Interim Chairperson
Jo-Anne Hewitt is Executive Director Disability at Amanda has been a Board Member of CDS since
The Benevolent Society. 2015 and became Interim Chair in July 2017.
Jo-Anne has over 35 years’ experience in the not- Amanda has been a Director of Variety Australia
for-profit sector and has held senior executive roles since 2012 and Variety NSW since 2004 and has
in a number of large NGOs including at Uniting, been the Chair of Variety NSW/ACT since 2015.
where she previously held the role of Director
Disability, and more recently, as General Manager Amanda came to CDS with senior-level strategic
Client Services at Cerebral Palsy Alliance. marketing and organizational change experience,
both nationally and internationally. She mentors,
Jo-Anne was the Board Chair for Centre for researches and advises in corporate strategy and
Disability Studies until July 2017. She is a former change management. Amanda’s work focuses on
Board Director of Mater Dei School (Camden) the food and humanitarian supply chain sectors
and is the founding chair of the Futures Alliance, and her research interests are in organizational
a collaboration of community representatives transformation, disability and social impact.
from the disability and aged care sectors in NSW
seeking better futures for people with disability
who are ageing.
9 CDS | Annual Report | 2017CDS Board Directors
Professor Patricia O’Brien Craig Gallagher
Board Member Board Member
In 2009 Patricia returned to Australia from Trinity Craig is a consultant at Hunt & Hunt Lawyers,
College Dublin to take up the position of Director North Ryde and practices in the property, estate,
at the Centre for Disability Studies (CDS), and planning, commercial law and commercial
Professor of Disability Studies, University of litigation areas and has acted for many clients
Sydney. within the Parramatta Local Council area for a
period of 33 years.
At Trinity College Patricia was the Foundation
Director, National Institute for Intellectual He is Chairman of Western Sydney Venues
Disability where her work supported a mission Council and Director Venues NSW. Craig was a
of Inclusion through Education, Research and former trustee of The Parramatta Stadium Trust
Advocacy. Prior to Ireland, Patricia worked at the for thirteen years, and Chair of that Trust for six
University of Auckland where she taught both years.
graduate and post graduate courses in human
services and special education. Patricia has He was also a Trustee of The State Sports Centre
co-edited two books that promote the needs for Trust for fifteen years. Craig served on both trusts
disability services to be value-driven and person- as Chair of the finance and audit committee for
centred organisations. many years. Craig lives at Meadowbank and is
involved in the local community having been a
Since taking up the position at CDS Patricia member of Epping Rotary for 15 years and also
has led a team of researchers, educators and being a director of Bendigo Community Bank,
clinicians in implementing the vision of the North Epping.
organisation, ‘Building Capacity for Change’.
At CDS Patricia promotes research that is
inclusive of people with intellectual disabilities
as researchers.
10CDS Board Directors
Professor Ian Cameron Dr Phillip Morath
Board Member Board Member
Ian is a Rehabilitation Physician who holds the Phillip has nearly 30 years’ experience in senior
Chair of Rehabilitation Medicine at the University of management of non-government organisations
Sydney and is Head of the John Walsh Centre for providing services to people with disabilities.
Rehabilitation Research. He has broad interests in
disability and rehabilitation issues, and provides Phillip is currently the CEO of a community
health services to people with disabilities. housing provider. He has extensive experience in
implementing organisational change and has been
a participant in several Commonwealth and State
Professor Karen Fisher Government committees that have reviewed key
Board Member service areas. He has held directorships in several
service and peak organisations.
Phillip has a PhD in organisational change,
a Company Directors Diploma, and is a fellow of
the Australian Institute of Company Directors.
Karen is a Professor in the Disability Research
Program at the Social Policy Research Centre,
University of New South Wales. Her research
interests are the organisation of social services in
Australia and China; disability and mental policy;
inclusive research and evaluation; and social
policy process.
Karen retired from the CDS Board in
November 2017.
11 CDS | Annual Report | 2017CDS Board Directors
Tim Connell Professor Gerard Goggin
Board Member Board Member
Tim is a founder and currently the Managing Professor Gerard Goggin is the inaugural
Director of Quantum: Reading, Learning, Professor of Media and Communications at
Vision. For over 30 years Quantum has been the University of Sydney, a position he has
working with people who have a print disability held since 2011. Previous appointments
including blindness, vision impairments or include Professor of Digital Communications
reading disabilities such as dyslexia, providing at University of New South Wales (2007-2010),
assessment, support and the latest assistive the University of Queensland, Southern Cross
technology products. University, and, as visiting professor, at the
University of Barcelona.
Tim has been a regular presenter at
international disability conferences including Gerard’s research focusses on social, cultural,
CSUN, Closing the Gap, ICEVI and AER. and political aspects of digital technologies,
More recently he was a member of Federal especially the Internet and mobile phones and
Governments Dyslexia Working Party. media. He has published 13 books and over
140 journal articles and book chapters.
Prior to joining Quantum, Tim worked with the
Innovation Centre at the University of Gerard has been a CDS Board member since
New South Wales. November 2016.
12CDS Leaders
Clinical Professor Vivienne Riches Dr. Seeta Durvasula
Co-Leader - Research, Leader - Clinical and Consultancy Services
Evaluation and Development
DIRECTOR, HEALTH CLINICS (DDHU&NSIDHT)
CLINICAL PROFESSOR & PSYCHOLOGIST
MBBS, DCH, MPaed, MPH, PhD
BA, Dip.ED, MA (Hons), PhD, M.A.P.S., FASID
Semester 1, 2017 involved sharing the Unit of I am a developmental disability physician, Clinic
Study Coordinator role with Laura Hogan for Director of two multidisciplinary health clinics for
the Post Graduate Program in Developmental people with intellectual disability, and a Senior
Disability Unit GSDD5012 – Positive Behaviour Lecturer at the Sydney Medical School. In 2017
Support and Quality of Life (QOL). I continued direct clinical work, development of
clinical services, research and teaching.
Active Support Training was provided to the
staff of the Adult Enhancement Program (AEP), I continue to teach medical, dental and pharmacy
Down Syndrome Association (DSA), Singapore, students at the University of Sydney in the area of
and this has been followed up with ongoing developmental disability health.
consultancy in conjunction with Professor I am supervising four medical students in their MD
O’Brien and Professor Emeritus Trevor Research Project that will be completed this year.
Parmenter. This year, I have undertaken field supervision of a
Master of Social Work student in her final year.
Mentoring and teaching has been provided
to Lifeline psychologists and counsellors via a My colleagues and I have started clinical research
number of mentoring and supervision sessions, into frailty in people with intellectual disability,
while several training workshops were provided. and aim to develop a Frailty Index that will be
used to monitor people attending the clinics. I am
In the research space, Professor O’Brien and the co-chair of the Research and Development
I are currently sharing the leadership role of Subcommittee, Intellectual Disability Network,
the research pillar and many changes are Agency for Clinical Innovation; a member of the
occurring Australia wide in the research space Executive Committee, Australian Association
with an increasing emphasis being placed on of Developmental Disability Medicine; and an
collaboration with industry. editorial consultant and reviewer for a number
I have also continued to provide psychological of journals including, Journal of Intellectual and
services to clients through the NSW Developmental Disability, and the Medical Journal
Developmental Disability Health Unit this year. of Australia.
13 CDS | Annual Report | 2017CDS Leaders
Laura Hogan Emma Doukakis
Leader, Education, Training & NDIS Co-Leader - Education & Training
BAppSc (Occupational Therapy), MHlthSc B.Econ (SocSci), LLB, GDipLegPrac,
(Developmental Disability), Cert IV TAE Cert IV TAE
This year has been diverse and busy. Training This year my focus has been on developing CDS’
in the I-CAN and Person-Centred Active Support education and training opportunities, including a
(PCAS) has taken me to Dubbo (3 times), Grafton, diverse public workshop calendar and in-house
Newcastle and numerous locations around greater training offerings for organisations. In April 2017,
Sydney. The redevelopment of the CDS training CDS was awarded a Northern Territory Government
calendar and workshop series has allowed me to sector development grant to deliver Person Centred
develop and deliver sector training in the areas of Practice and Planning Workshops across the
Supervision, Sexuality & Relationships, Anxiety and Northern Territory in the 2017/18 financial year.
Depression and the practical application of Person To date this project has taken CDS staff to Darwin,
Centredness for clinicians. Katherine, Alice Springs and Nhulunbuy. This has
been an exciting piece of work for CDS to branch
CDS continues to work towards being an active into a new geographical location and the staff,
provider of NDIS services to individuals across including myself who have worked on the project
many of the areas of our business and I have been have reported positive individual outcomes through
grateful of the support from Sarah Wagstaff with this the challenges of tailoring the content and delivery
work, especially her diligent approach to third party of the training package to a whole new target
verification preparations. population.
The changing disability sector has required us to CDS continues to expand our in-house training
be responsive in the way we deliver services. I and education program. This includes domestic
am looking forward to launching some of our new and international contracts, one example of this
approaches in the near future including: the I-CAN is the series of workshops run by myself and
USB, the I-CAN member’s network and the Active colleagues in Singapore across the year, taking
Support and I-CAN Instructor Certifications. These person centeredness to disability specific schools,
new and innovative approaches have been well accommodation providers and services. Our in-
received by our pilot and potential partnership house training and education programs enable CDS
organisations. to work with providers to tailor our material to meet
I have continued in the role as Vice President of their individualised needs, ensuring participants
ASID Ltd over the past 12 months which has been receive the best possible learning opportunities.
a challenge but also a career highlight.
14CDS Leaders
Kate Flannery Friederike Gadow
Co-Leader - Education & Training Co-Leader - Education & Training
BSocWk, MA (DevelStuds), MA (Special Education, Speech Pathology),
Grad Cert SocResearch PhD candidate
I joined CDS in May 2017 to cover Friederike In 2017 I have split my time between coordinating
Gadow’s maternity leave. It has been a great the NSW research component for the ARC
opportunity to work with the uni 2 beyond team at an Linkage Grant study “Quality and outcomes of
exciting and challenging time. individual supported living (ISL) arrangements
for adults with intellectual and developmental
My focus has been on developing the initiative’s disabilities” and uni 2 beyond, which facilitates
strategic direction and future sustainability, opportunities for people with intellectual disability
creating internship placements and putting in place to experience university life.
evaluation measures. I have also been engaged
as a Social Worker at the CDS Clinic in Cremorne, I am currently on maternity leave and will return to
as well as developing and co-delivering a sector the office in 2018.
training workshop on Supported Decision Making for
Young People.
15 CDS | Annual Report | 2017Article 24, clause 5 indicates
its responsibility to
"ensure that persons with
disabilities are able to access
general tertiary education,
vocational training, adult
education and lifelong learning
without discrimination and on
an equal basis with others."
The United Nations Convention on the Rights of Persons with Disabilities, 2006.
16CDS Staff
Jessica Buhne Vera Laptev
ational Disability Coordination Officer (NDCO)
N National Disability Coordination Officer (NDCO)
and Education & Research Officer
BSW/BA
BSocSci, DipCouns, DipBus (Legal Services)
Here at CDS I work within the uni 2 beyond My role at CDS is the National Disability
initiative and in the National Disability Coordination Officer (NDCO) for Sydney
Coordination Officer Program. Funded by the Region. This position is funded by the Federal
Federal Department Education and Training, Department Education and Training until June
the National Disability Coordination Officer role 2022. The NDCO Program works strategically
involves working with educators, employers to assist people with disability access and
and other people in the community to identify participate in tertiary education and subsequent
and address the barriers faced by people employment, through a national network of
with disability in relation to education and regionally based NDCOs.
employment, and to raise the awareness of
rights and responsibilities in these areas. I am involved in projects and events related
to transition for people with disability into
My role within the uni 2 beyond initiative has education and employment in the Inner City,
been to facilitate the connections between uni Eastern Suburbs and St George-Sutherland.
2 beyond students and their mentors. This has
given me the opportunity to work closely with Currently I am undertaking a Masters Degree in
uni 2 beyond students and bear witness to the Arts and will be on maternity leave in 2018.
developing relationships that have grown with
mentors.
Between both of these roles, there have been
a number of projects that I have worked on,
with the common theme being the full inclusion
of people with disability in education and
employment.
17 CDS | Annual Report | 2017CDS Staff
Jemima MacDonald Dr Tanya Riches
Education, Development & Research Officer Training, Development & Research Officer
BAppSc (Speech Pathology), BA (Psych/Pol Econ), MATS, M Phil, PhD
MHlthSc (Dev. Disability)
Over the year my focus has mostly been around Within my role at CDS, I have contributed to
the coordination of uni 2 beyond. There have a range of different projects, working with a
been a few key highlights of the year with this number of government and industry partners.
initiative. We have seen a new cohort of 11 The research pillar at CDS has various
students, and have engaged 40 mentors, our bespoke research projects to answer pressing
highest number yet. We have also begun to roll questions that investigate solutions to needs
out internship opportunities for the students. that have emerged within the new disability
I also led a crowd funding ‘Creating Futures’ landscape. Our team has contributed to a
campaign, raising $20,899 for the initiative, which number of important projects including: gaining
was then featured in the Sydney Morning Herald understanding of how the NDIS rollout affects
Newspaper and in The University of Sydney public health providers in one of the public
website. health regions; evaluating the determination
of the level of support in accommodation
I really enjoyed coordinating the Social for people with disability; and assessing the
Networking Group (SNG) for another year, as contributions of peer support workers that have
I can see the benefit for both members of the children with disabilities. We also completed
group (people with and without disability) and the work associated with an ARC grant on
local businesses. In July we were successful in Independent Supported Living (ISL) with Curtin
securing a grant with the City of Sydney Council and Melbourne Universities. I travelled to
to support us in accessing venues in the City of Bougainville, Papua New Guinea and was able
Sydney area. to witness the formation of a disabled person’s
Over the year I have also delivered training organisation (DPO) within this very vulnerable
sessions such as a one day workshop on region.
Relationships & Sexuality for disability support Within my role as facilitator of the inclusive
staff in Sydney, along with a ‘Person Centered research network (IRN) it was exciting to
Practice and Planning Workshop’ and publish our first paper this year. The group
‘Supervision, Mentoring and Peer Support’ in the continued to build their skills in coding data,
Northern Territory. I look forward to 2018 and the and in writing.
new and exciting challenges it will bring.
18CDS Staff
David Taylor Peta Hurst
Research Assistant Personal Assistant/ Office Coordinator
BA (Hons) BA Cert TESOL
I obtained my Bachelor of Arts with Honours I work on a full-time basis at CDS, supporting
majoring in philosophy from the University of Patricia and the Team, as a Personal Assistant
Sydney in 2014. I then went on to do a Master and Office Coordinator. I have really enjoyed
of Arts (Research) where I completed my thesis the variety of work I have been exposed to,
looking at areas of legal abandonment called and working with the supportive and caring
‘sacrifice zones.’ Throughout my postgraduate staff here.
studies I was employed St George’s Anglican
Church to run an ongoing lecture series called The highlight of my time this year at CDS,
PEACEtalks which focused on issues around; was helping to organise and coordinate the
politics, ethics, the arts and culture. I also CDS short course program which included
have served for three years (2014-17) on the international presenters. I also enjoyed
UNSW Human Research Ethics Committee as attending the ASID conference in Hobart,
a pastoral representative. Prior to finishing my where CDS had an information booth.
undergraduate degree I also worked as a youth
worker for Barnardos Australia.
I currently work with the research pillar of CDS,
offering research and administrative support
for various projects. I am involved in data
collection, assisting with ethics applications,
and conducting interviews for research
purposes. Most recently I assisted Professor
Patricia O’Brien in completing an in-depth
report on the use of peer-support facilitators to
assist parents of children with disabilities in a
Sydney based community organisation.
19 CDS | Annual Report | 2017CDS Staff
Bruce O’Brien
Administrative Assistant
Dr Michelle Bonati, Sydney University with Jemima MacDonald, CDS
I am a member of the CDS administration
team where I support staff with conferences,
photocopying, binding, coordinating mail-
outs and general office work. This year
I really enjoyed being a part of the CDS
Inclusive Research Network and I enjoyed
going to Hobart and presenting at the ASID
conference. I am also a life member of Self-
Advocacy Sydney. I am also currently the
President of Self-Advocacy Sydney.
Past and Present NDCO Staff- Timothy Hart, Vera Lapev and
Jessica Buhne
Ray Murray, Jessica Buhne, Friederike Gadow, Prof Patricia O’Brien,
Dr Michelle Bonati and Jemima MacDonald
20CDS Staff
Jack Kelly Sarah Wagstaff
Administrative Assistant Research Support Officer/ Project & Training Officer
Inclusive Research Coordinator
BA (Psych)(Hons.), M. Teach(School Counselling)
I have worked at CDS since January 2016 and I have been a jack-of-all-trades at CDS this
worked one day a week on the FACS ADHC year. I work two days a week as a Project &
Change Action Project in 2016 and this year I have Training Officer supporting the delivery of
been working on ‘The Two Of Us Project’. I have I-CAN training, coordinating CDS’s registration
also been part of the Inclusive Research Network as an NDIS provider, and applying for grants to
for three years and presented in Melbourne at expand CDS’s scope and services.
the ASID Conference in 2015 and at the IASSIDD
conference in 2016 I also presented this year at I also work alongside a colleague as a
the ASID Conference in Hobart. research support officer. This year, we have
completed a project called ‘The Two of Us’
which investigates effective relationships that
people with intellectual disability have with
others. Two big successes that have occurred
as part of this project were people’s stories
being presented on banners at CDS’s 20th
anniversary and presenting the project’s
findings at the ASID Conference held in Hobart.
In addition to these bigger roles, I am also a
member of the Inclusive Research Network
(IRN) and have roles in organising the Social
Networking Group and the Disability Research
Students’ Group for research students in the
disability field at the University of Sydney.
Currently I am undertaking a Master Degree in
Health Sciences (Developmental Disability).
21 CDS | Annual Report | 2017An affiliate of
er
The Two of Us PRoJeCT
This project is called
‘The Two of Us’ because it
is about the relationships
between two people.
This project focuses on the relationships that are important to people with an
intellectual disability and how they change over time. with this project we also
wanted people to be able to share their stories if they wanted to.
Part one - The Interviews
The first part of the project was finding out about the relationships that are important to people with an intellectual disability.
We asked people with a disability to choose a person who is important to them in their life. For example a friend, family
member, work colleague, mentor, advocate or team mate.
We asked about:
• How did the relationship start?
• What makes the relationship strong?
• Why it is important?
Part Two - The Banners
We also wanted to celebrate the good stories about relationships that were shared with us in the interviews by having a
display of stories and photographs.
Both people who shared their relationship story needed to agree to be in the show. We hoped that these banners would
showcase different types of relationships.
The Researchers
This project was worked on by Jack Kelly and Sarah Wagstaff, who both work at the Centre for Disability Studies.
Jack already had some experience in inclusive research when he started working on ‘The Two of Us’.
Jack
I came out of school at the age of 18 and went over to a local day program in my area. One day a support worker came to me
and said “There is this study group called inclusive research that does research on different topics for people with a disability
by people with a disability”. I’ve always had interest in the background of people with a disability because I am a person with a
disability myself, so I joined.
Then they had a job going. It was a paid job one day a week for the Centre for Disability Studies. I applied for it and came
in for an interview and got the job. I worked on a project for a year funded by a Government department called FACS. I was
contracted to see what employees with a disability thought about the closure of ADHC which looked after disability and was
closing because of the NDIS. The closure of ADHC was scary for them. Then last year I was presented with the idea of ‘The
Two of Us’ and thought “That’s interesting.”
In the end, the most interesting thing about this project is being able to showcase my own relationship. It’s interesting to see
how it evolved over time. I would just like to add that this has been a great experience and a great learning curve for me, and it
has been so interesting to hear about people’s different backgrounds.
for sarah, doing this project is her first experience of inclusive research.
Sarah
I come from a psychology background, so I have a lot of experience doing research, but most research in psychology is about
crunching numbers. For my psychology honours project I taught people memory techniques and tested how many words they
could remember. It was very different to ‘The Two of Us’- the memory project was done online so I didn’t even meet any of my
participants.
Jack and the CDS team have been a really valuable resource for me, and have supported me to learn every step of the
inclusive research process: including finding participants, doing interviews and analysing data. I have really enjoyed hearing
everybody’s stories, and am really excited that we get to share them with everyone through these banners. This project has
been a wonderful experience, and I have learnt a lot.
Jack and sarah have really enjoyed working together.
Jack
When Sarah started I feel like even though sometimes it’s hard for her, she carried the ball and ran with it so well, I’m really
impressed with her efforts. At least when I started I had some knowledge of inclusive research, Sarah has had to learn
everything from the beginning.
Sarah
A very interesting part of working on ‘the Two of Us’ project has been getting to know Jack and getting to know ways that we
can work together. When the project first started Jack and I would make a list at the beginning of the day of everything that
we needed to do and kind of go through it point by point. I think we worked very much side-by-side for the first few weeks.
During that time it was really great to get to know Jack and learn a bit about his life and for him to learn a bit about mine. Over
time we got more used to the way that we prefer to work and the kind of tasks that we really excel at naturally so we were
able divvy out tasks at the beginning of a day and work independently for longer and longer each week. That said, inclusive
research involves a lot of collaborative work so there are also times where Jack and I are working side-by-side for a whole
day. I think we work together really well as a team.
Acknowledgements
The Centre for Disability Studies would like to express enormous gratitude to the NSW Department of Family and Community
Services for providing funding for this project.
We also want to give a big thank you to all the people who participated in this project and chose to share their story!
Funded by the NSW Department of Family and Community Services.
22CDS Clinic Staff
Ashwin Singh Elizabeth Hammond
Paediatric Psychologist Clinic Coordinator, Northern Intellectual
Disability Health (NIDH)
BSc/BCom, GDipSci (Psych)
Justice of the Peace
I am the Paediatric Psychologist at Northern I have worked at the Northern Sydney
Intellectual Disability Health(NSIDH) in Intellectual Disability Health (NSIDH) Clinic for
Cremorne. In 2017, Dr Vella and I continued four days a week, since it opened five years
to provide comprehensive health assessments ago. It continues to be a privilege to work
and reviews with young people who have an for the clinic, as I believe that the dedicated
intellectual disability and other complex needs. and hard-working team, continue to make a
I have also really enjoyed my work with young positive difference to the lives of our clients,
people and their families to develop some who are living with intellectual disability and
ways of improving their lives. complex health needs.
I have recently completed training in
providing comprehensive autism diagnostic
assessments (the gold-standard ADOS 2
assessment) and look forward to providing
a broad range of assessments, including
non-verbal intelligence, sensory processing,
attentional, emotional and behavioural
measures to families in the coming year.
23 CDS | Annual Report | 2017CDS Clinic Staff
Christine Papangelis Rebecca Stack
Social Worker Clinic Nurse
BA (Hons), MSW(Q) BSc (Hons) Intellectual Disability Nursing
I began working at the NSW Developmental I joined the Northern Sydney Intellectual
Disability Health Unit in September 2017, Disability Health Team (NSIDHT), based in
following a student social work placement. Cremorne in August 2017. I work primarily
I work with service users with intellectual within the adult clinics in Cremorne and
disabilities, their carers and other clinic Ryde at the Developmental Disability Health
staff. Using person-centred and strengths- Unit (DDHU). My role involves liaising with
based approaches, it is a privilege to use families and/or care providers to gather health,
my social work education to assist people to functional and social information about client’s
thrive and gain the best outcomes possible. prior to their appointment. In addition I obtain
I am involved in case management and relevant patient medical records external to
psychosocial assessment and support for the clinic as required. Together with Dr Seeta
clients, and assistance with access to the Durvasula we have completed comprehensive
most suitable NDIS services. I also support health assessments, providing information,
families and carers, and facilitate access to a recommendations and necessary supports for
range of health-related, community, financial the health requirements of the clients.
and respite services. recommendations and
necessary supports for the health requirements It’s a pleasure to have joined such a
of the clients. passionate and supportive team and I look
forward to the year ahead.
24CDS Clinic Staff
Dr. Yvette Vella
Developmental & General Paediatrician
BAppSc (OT), MBBS, FRACP, MPH
I am the Developmental and General Paediatrician
at Northern Intellectual Disability Health (NSIDH)
in Cremorne. I joined the team in June 2015. I work
with school age children and young people who
have an intellectual disability and other complex
needs. I provide health assessments and attend
multidisciplinary clinics in schools for specific
purposes in the Northern Sydney Local Health
District.
The team has continued to enjoy a collaborative
relationship with teachers and families through
our school clinic model and we are now attending
Clarke Road School in Hornsby twice each school
term.The school clinic continues to provide an
opportunity to discuss and plan management to
support children with very complex behavioral
presentations that are impacting on school and
family function.
We have continued to see patients regularly
at the paediatric clinic at Cremorne, maintain
our connections with local paediatricians and
community health services to care for young
people with complex behavior needs.
As a service, a future goal is to develop resources
to provide parent and teacher education sessions.
We would like to focus on an approach to behavior
support and understanding the presentation
of learning difficulties in the context of Autism
Spectrum Disorder and Intellectual Disability.
25 CDS | Annual Report | 2017You can also read
